h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Like everyone else I've been reading your reports for some time now, exceptionally well written, and to me at least seem to give a real insight. Hope the treatment carries on well, with not too many bad side effects of the drugs and radiotherapy... 10%? I'm never sure where these figures come from; I survived two neurological opperations on my brain, each with a 5% or less chance of living, and had a RTA, (that lead to the two subsequent opperations), that was a lot less than 5% chanc of survival... Hmm, now, here of course, I'd insurt the really whitty quote on stats, only I can't remember it

As a fully trained statistician with a background in the study of medical statistics. I can say with a 100% confidence interval that statistical results are b*llocks when applied to only to the individual.

and that was so much better than the quote I couldn't think of

Also as a fully trained statistician, I can claim with high degree of confidence that no statistician knows how to string a sentence together properly

The quote may have been 'There are lies, damned lies and statistics' which is often attributed to Churchill, but which probably wasn't.

I remain fond of the quote at the front of the Stats section of my O'level Maths book, about governments "using statistics like a drunk using a lamp-post - for support rather than illumination".

Oh - and then there is the now infamous one that "47% of all statistics are made up".

And while I am on a roll, one of my favourite nutrition books has a chapter entitled "Which apricot, grown where?" making the point that it is impossible to make valid nutritional statements about food ("apricots are high in vitamin A", for example).

Ben
*who isn't a statistician, but who has a compulsion to prod statistics to see if they work*

GreyDesk is absolutely right.

Bels, if you want some encouragement read 'Full House' by Stephen Jay Gould. In 1982 he was diagnosed with abdominal mesothelioma, which had a median mortality of 8 months according to the medical literature. He died twenty years later at age 60, of a secondary and unrelated cancer. In fact, don't read the whole damn book, read this excerpt for more details instead: http://www.cancerguide.org/median_not_msg.html

I just found this entry today (I've been away from hootoo for a while) and I must say I read it avidly. You're totally right, noone knows what the hell to expect if they are unfortunate enough to be in your situation. You are doing a tremendously valuable thing and I applaud you.

Ste

That's the same article my friend liked (see above)I hope you too are out on the right side of the bell curve

I have survived two medical wonders after being given a generous 1-3% chances of a non-vegetative survivalPasssed up the 10 year mark tooStats mean nothing to an individual. Information about how a 1000 or 100,000 other peoples experiences happened are just that,their experiences.
I have the best of wishes for you Bels

I may have mentioned this before, but I have two friends, both of whom have repeated doses of cancer.

The German's cancer cleared up each time without any treatment - the last time this happened they were about to operate and were actually extremely peeved that there were no signs of cancer at all when they did the pre-op X-rays - she had an entire surgical team booked and ready to go, and there was nothing to remove. The Swede, on the other hand, has had every single kind of treatment they do, and still it appears somewhere else.

There are two morals to this story. One is that belle-curves are just that - individiuals can appear anywhere at all on them, and their experiences say next to nothing about the experiences of other people.

The second is that - as you yourself have said, Bels - there are well people who happen to get cancer, and there are cancer victims.

Stay well.

B

Well thanks everyone for a very interesting set of responses, and thanks to two of you for pointing me towards the Gould article. That article was very interesting, but I have to say I found very few points of similarity between his case and mine. His disease was a totally different one, for a start. He was living in a different part of the world. And his story took place over 20 years ago - aeons ago in medical research terms. When the personal computer and the www were still in the womb. Things are very different now.

I would also like to caution against thinking of cancer as a single disease. It is hundreds of different diseases, and the prognosis depends as much as anything on how advanced it is in any particular case. Somebody may say their cancer disappeared without treatment, somebody else's may be permanently cured by surgery or some other procedure. Fine. All I am concerned with at the moment is my own cancer, which I am told is fairly well advanced, with secondary tumours or metastases on the liver which cannot be eliminated. All I am prepared to do is to compare apples with apples - nothing else is relevant, and even two apples are never absolutely identical. Every individual is unique.

In fact I was chatting the other day to a fellow radiotherapy patient and I discovered he was on exactly the same chemotherapy as I am and had exactly the same radiotherapy treatment plan too. You might think his underlying condition was therefore about the same as mine, but not a bit of it. It's much more complicated, I won't go into it all here, but he has had surgery in the past and actually at the moment they don't even know if there is a tumour there. Whatever shows up on the scans might be a tumour or could simply be some harmless scar tissue from previous surgery. By the way, we compared notes about the side effects of the chemo and the radio, and it's clear that they affect us each differently...

But this is all a bit of a side issue really. What I really wanted to say is that I obviously didn't make myself at all clear in the last section of the entry, so I've just written another section which I hope will help.

So please nip over to A1050986 and search for 13 July. Thank you.

Bels, I've been following your journey over on A1050986 with great interest and have been impressed by your ability to write so well. At times I have been very moved by what you've said. Your most recent addition about facing your own mortality - hope I've interpreted it the way you intended - has really got me thinking.

Having lost my father when I was eight years old, I'd like to touch on this but hesitate to do so as it might be intrusive. I won't go any further until you say yeay or nay.

With love to you and Mrs Bels and the Babybels - and another hefty boot up the jaxsie to Mr Tumour and his mates.

Teuchter, the nail, you have hit her firmly on the head. It is precisely about facing up to the possibility of my early demise. It is about looking squarely into the future and asking a series of what-ifs. Given my diagnosis this seems to me to be a perfectly rational and sensible thing to do.

Completely rational and sensible Bels. It behooves all of us to do it, to some extent, of course, but I do follow your argument about the shift in focus and priorities.

B

there is nothing i can say that hasn't already been said except that I often think about you and your family and pray that whatever happens it is easier than you imagine on all of you.I hope that makes sense

Bels
I sincerely hope you're around for a long, long time to come. But, as you say, possibilities have to be considered and I do admire the way you're tackling this head on.

My two younger brothers have very little memory of our Father because they were three years old and 18 months old when he was killed in an accident. My sister and I were seven and eight yrs old so have a few more memories. One of the things that upsets us all, nearly 40 years after the event, is that we have no 'adult' sense of what he was like.

I don't know how old your children are - but please think about getting as much of yourself onto video-tape as you can because this will help them later in life. It's little things that help, eg being able to see you've got the same dimple in your chin as your Dad had, or you've got the same laugh or the same pattern of baldness!
We had none of this - in the sixties all we had was black and white cameras and they weren't used with the same frequency.

You're such a great communicator that you've probably already thought about what you could write to them. It'll never be wasted - even if you're around when they become parents themselves. It's always good to have the evidence that you are loved. And they can show the video-tape to their own children.

Hope this wasn't intrusive in any way.
J

Bels, you're so right about each individual case being different. Just as we all experience grief differently. No-one can genuinely know how you feel, or present another case as being like yours.

You sound as if you are being very sensible in planning for the worst case scenario, getting contingency plans in place - it will be great if you don't need them, but will help ease what will be a very difficult time if they are necessary.

Still thinking of you & your family, whishing you all peace & fortitude.

Bels,

You're in my thoughts today
Thank you for the update.

Teuchter, don't worry - you write very sensitively and not intrusively.

Teasswill, I don't wish to split hairs, but it isn't the worst case that I am planning for. I'm not quite sure what the worst case would be, but I bet it wouldn't allow me to do any planning! No, I am taking a sort of middle-of-the-road position, where I have a reasonable enough quality of life for enough time to get certain things accomplished.

My Personal experiences with plans.

I thanked my parent after being informed her burial and service plans were set (while still healthy)I saw it as a loving,considerate thing to do. To have all in order and wishes spelled out. Grieving is big enough without all the other decisions to be made. It is a comfort to know you are doing what the deceased would have wanted.

Paid for is also good if possible.
Long term care is important insurance to have. It is good to plan that or anything else missing or valuable to your experience for your loved ones future.

My father prepared the home they lived in for the next 20 years. That eliminated stress & worry and enabled it to be secure for her or in selling condition so mother did not have those worries the first few years after his death. It was easier for him to live knowing things were being done for the future security whether dad survived or not.

Bels, I think I understand what you are meaning. Prioritising, doing what you can while you can, to ensure as smooth a future as possible?

I am reminded of a family anecdote, though it is not the same situation as yours. Many years ago, my father was about to be hospitalised long term for TB treatment and was told to go home & 'put his affairs in order'. His priority was to prune his roses, which in retrospect greatly amused my mother, though probably not at the time.

Good wishes to you & your family.